CATHERINE SHEPHERD: Overcoming stigma around dementia

Sharing experiences helps educate families

I recently asked a friend of mine who is a caregiver to her mom, “what do you want people to know about living with Alzheimer’s disease or other dementias?”

Her reply was short, sweet and simple — “they are still people, they are someone’s someone and we need to remember that.”

Research shows that stigma around dementia is rampant. In a survey commissioned by the Alzheimer society, one in four Canadians said they would feel ashamed or embarrassed if they had dementia. Stop for a minute and think about that — look around those sitting beside you, work colleagues or friends at the hockey game — one in four.

Common stereotypes and myths can intimidate family and friends. It may cause them to dismiss symptoms thinking it’s a normal part of aging, or even worse, assume nothing can be done. So many people say “I feel like I’m alone with this diagnosis. I feel isolated.”

This is why reducing stigma was the focus of the Alzheimer Society of Nova Scotia’s January awareness campaign. It shared the unique and diverse stories of individuals living with Alzheimer’s disease or other forms of dementia, because the best way to understand the impact of stigma is to hear it directly from people living with dementia.

We held our annual Alzheimer’s awareness breakfast on Jan. 16 at the Membertou Trade and Convention Centre.

An audience of more than 300 heard different perspectives of life with dementia and everyone in that room was in some way able to “share in the journey.” It’s amazing to me that we had so many join us for breakfast. It is eye-opening and inspiring to see our community grow here in Cape Breton.

Darlene Carey, a local caregiver, told her story of her journey with her mom. Why, you may ask, would people share such a personal experience? When I asked she humbly said “when I was asked to speak at this year’s breakfast I was excited for so many reasons, but one reason was to let others know that you are not alone as a caregiver.

“When I started this journey with my mom, hearing someone speak and share made a huge difference to our family. I’m happy to be able to do that for someone now.”

One of the greatest gifts we can offer one another is sharing our experiences with dementia. The more we openly talk about it, the more likely we are to encourage others to learn more about how they can help make a difference, and be better prepared to help support individuals living with the disease.

Catherine Shepherd is the education co-ordinator for the Alzheimer Society of Nova Scotia in Cape Breton. She lives in North Sydney and happily spends her day providing resources and support for people on the dementia journey. To reach the society, call toll-free 1-800-611-6345 or email alzheimer@asns.ca.

How to better help someone with dementia?

Learn the facts. Research dementia and share accurate information with others. Misconceptions can intimidate family and friends. They can stand in the way of understanding the disease and helping those affected.

Don’t make assumptions. Dementia is a progressive disease and affects each person differently. If you have met one person with dementia, you have only met one person.

Watch your language. Negative language is commonly used to describe Alzheimer’s disease and other dementias. The wording often focuses on the illness, reducing people with the disease to labels or symptoms. Don't make light of dementia.

Be a shoulder to lean on. People with dementia do not want to lose their family and friends. They are still the same person they were before. They have the same ideologies and feelings. Be supportive. Stay in touch.

Treat people with dementia with dignity and respect. No matter what stage of the disease, they are still the same person they were before. Appreciate who they are and be patient with them.

Be a part of the solution. Become an advocate and raise your voice to help raise awareness.